Case Studies: ICORS

LISTSERV Choice Awards Grand Prize Winner: ICORS

The Information Center for Online Resources and Services, Inc. (ICORS) is a registered non-profit charity dedicated to assisting individuals and groups by offering support, information and community to people in need, including those affected by disability, family issues, health issues and other similar needs. To provide this assistance ICORS offers its constituent organizations technical assistance and services, including Internet services. The primary component of ICORS' Internet services is the large array of LISTSERV® email lists operating under its umbrella.

Almost everyone who comes to an ICORS email list home page – whether through a search engine query, a website on a specific topic or word of mouth – is looking for support and information on the particular issues and challenges that they are facing. And that is precisely what people find at ICORS, whose 272 lists, reaching about 93,000 subscribers in 147 countries, are designed to provide such support in a relatively safe climate, with an emphasis on civility and sensitivity. For ICORS, committed volunteers are essential; individuals who are involved with the various topics of their list volunteer their time and effort to help serve their list communities as list owners.

"There's a niche for ICORS in maintaining a private online place where people can connect," says Jasper van Beusekom, an ICORS Founder and Director. "For example, for people with rare diseases, the one-in-a-million, they are desperately trying to find anyone who has even heard of it."

Karen Reznek, who is van Beusekom's Founder and Director colleague and the head list owner of the Asperger list, shares a similar – and personal – perspective: "Speaking as a parent of a child with a significant disability, ICORS has been a lifesaver. And we have older adults with high-functioning autism who joined the discussion lists and learned for the first time that there are other people who are like them, telling us 'I never knew there was someone else like me.' But my daughter has grown up knowing there are many people like her. She has grown up in a very different way, thanks to LISTSERV."

Through the lists that ICORS operates, subscribers are able to post questions and concerns and quickly receive support and answers from all over the world, gaining access to the experiences and knowledge of many others who are coping with the same issue. ICORS runs email lists operating on all continents except Antarctica and prides itself on the flexibility of hosting email communities for groups, agencies, other charities and individuals who wish to be list owners and whose topics fall within the ICORS mission.

Following are some examples of how selected ICORS lists assist their subscribers with a range of issues and topics:

On the Asperger list, parents and adults with autism spectrum disorders come together to share support and suggestions to make the best possible lives that they can.

On Menopaus, women are able to share information and suggestions to assist with some of the more debilitating symptoms of this phase of their lives.

On Celiac, people band together to find ways to live well without gluten. Subscribers provide information on gluten-free food options available in every part of the world.

The many Gifted and Talented child-focused lists provide parents with an opportunity to provide the best experiences for their children.

ICORS' Adoption lists provide support and information needed to enhance and ease this complex process. And when children are brought home, the parenting advice offered on the lists help parents meet the special demands that adoption brings to a family.

Every list that ICORS hosts provides very much needed support and information for the population it serves. Many of the ICORS lists originated on Maelstrom, a LISTSERV site that was hosted by St. John's University. When the university discontinued support for Maelstrom, a core group of list owners got together to create ICORS, which began running on L-Soft's LISTSERV software in January 2006.

This core group includes van Beusekom and Reznek as well as Cynthia Teeters and Tom Rawson, who work together to provide support for the constituent list owners when questions come up – whether technical issues in running lists, support for ethical issues or tips for managing challenges with subscribers. ICORS provides a Terms of Service (TOS) document that list owners are expected to follow; however, within those guidelines, list owners set the rules for their own lists and run them without unnecessary involvement from ICORS leadership.

Key considerations for ICORS, as a health and social services email list organization, include the need for a higher level of privacy than what is required for many other types of lists. People come to ICORS lists with many personal issues that they don't wish to see made public. While there are no guarantees that information will remain private, ICORS leadership indicates that a more secure environment is created with LISTSERV than with other email list software.

It is also useful for the list owners to have more control over subscription options. Some ICORS list subscribers have disabilities that may make it difficult to manage their own subscription options. Having the flexibility for both subscribers and list owners to manage subscriber options is very helpful. Because ICORS has several lists for people with visual impairments, it is very important for list owners to have the ability to control the output from their lists, which LISTSERV supports. Approximately 80 percent of ICORS subscribers are in North America.

According to Reznek, "LISTSERV software gives us the flexibility to accomplish whatever we need, and the support provided by L-Soft's knowledgeable and very helpful staff – a staff that apparently never sleeps – has been invaluable. L-Soft has gone far above and beyond all expectations to keep ICORS running flawlessly."

Looking ahead, the ICORS Founders and Directors hope to grow and provide new lists that fit within the ICORS mission for the people who need them, stating: "We will continue to provide whatever support is needed to accomplish that. We have utilized many new LISTSERV email list management features as they have become available. ICORS is a new breed of charitable organization that not just uses but operates solely within the environment of the Internet. Our success shows that using email-based mailing lists to share support and information is effective and efficient for a large number of people who might not find that level of support in any other way."

For groups wishing to set up a larger collection of lists under one or more related categories, be sure to have a very clear idea of what you hope to accomplish. Develop a workable focus and mission and adhere to it so you and the list owners do not become overwhelmed. For the same reason, resist the temptation to welcome every worthwhile list that does not fall within your original focus.

Provide a Terms of Service (TOS) document. Solicit input from the list owners. Allow the list owners to run their lists within the framework of the TOS, stepping in only when requested or if the list owners are violating the TOS.

Be available to provide support to the list owners. For example, ICORS runs a list for the list owners, in addition to having a contact link. All list owners are strongly encouraged to subscribe to that list. That is the place to ask technical questions, as well as any other questions related to running their lists. It is also the place where we post information that affects our lists – current spam blocks, maintenance, and new LISTSERV features.